11. Regarding treatments: I get Xeomin injections every 3 months to be able to help keep my head straight and reduce tremors. I use essential oils and muscle relaxers to help with pain relief. Lots of yoga and exercise. I’m on a never ending journey to learn more about positively living with chronic illness

12. If I had to choose between an invisible illness or visible I would choose: Don’t know. They both stink.

13. Regarding chronic illness and working: I’m unemployable in the corporate world now. I’m working on building up my blog and freelance writing. I also have lots of ideas that I don’t have the time to get to right now!

14. People would be surprised to know: 1. Anxiety is a big part of this disorder 2. What my trapezius muscle feels like most of the time.

15. The hardest thing to accept about my new reality has been: dependence on other people and being patient with them when they don’t understand.

16. Something I never thought I could do with my illness that I did was: have somewhat of a normal life. I was incapacitated for nearly a year.

17. The commercials about my illness: There aren’t any for dystonia. We don’t have a celebrity spokesman although the Michael J. Fox Foundation has added dystonia to their research since it can co-exist with Parkinson’s for many people.

18. Something I really miss doing since I was diagnosed is: Jumping in the car with my kids and taking them anywhere I wanted. Now it’s got to be planned with someone else driving.

19. It was really hard to have to give up: see 18.

20. A new hobby I have taken up since my diagnosis is: Yoga

21. If I could have one day of feeling normal again I would: Be incredibly happy.

22. My illness has taught me: God is in control and to trust Him even when things are not going the way I hope. To be thankful for small things.

23. Want to know a secret? One thing people say that gets under my skin is “God doesn’t give you more than you can handle.”

24. But I love it when people: Ask me what dystonia is, because it is so misunderstood.

25. My favorite motto, scripture, quote that gets me through tough times is: It’s hard to pick but this is a favorite. 2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”

26. When someone is diagnosed I’d like to tell them: I’m so sorry. I wouldn’t wish this on anybody. Welcome to the world this difficult and unpredictable disorder. You’ll learn what works best for you as time goes on. Life is still worth living.

27. Something that has surprised me about living with an illness is: Life goes on and the time passes. It’s up to me to make them most of it.

28. The nicest thing someone did for me: Shoutout to my family who patiently pick up the slack for me. I know this affects them every single day.

29. Why I advocate: We need more awareness and more treatment options. Dystonia needs to become as easily recognized as other chronic illness conditions such as Fibromyalgia Parkinson’s, Multiple Sclerosis and countless others.

30. The fact that you read this list about living with chronic illness makes me feel: thankful that you took the time to read it! Many people don’t know about cervical dystonia, even though it’s the third most common movement disorder after Parkinson’s and Essential Tremor.

I started bullet journaling a while back and found an unexpected benefit: it helps my mental health. This is in spite of the fact that manyof my pages are a scribbly mess. My ruler slips, I smear the ink pad, I lose track of the dots and sometimes stamp upside down. I’m still deciding on which spreads work best for me. Also my handwriting is sloppy. (Though if I were to slow down and write more mindfully that would probably help.)

It sounds kind of chaotic, but really it isn’t. For the first time in my life I’ve found a system that helps my mental health and actually works for my ADD addled mind. If I don’t have a spread for something that pops into my mind, I have designated “brain dump” pages where I record random thoughts. (This often happens during a yoga session!) This gives my mind a rest from trying to remember everything that dances across it on any given day.

Plus I’m actually getting stuff done. Getting the noise out of my head has greatly reduced my anxiety levels which trigger my dystonia and IBS symptoms (which typically happen at the same time.)

And one other thing…playing with paper, washi tape and pens makes me happy. It gives me something to focus on besides dystonia and chronic pain.

Now just today my rambling mind started to compute if the bullet journal of choice, a Leuchtturm costs about $20 and I have to get a new one every four or five months at the rate I’m going, isn’t that pricey compared to a regular planner? (If creating a bullet journal stresses you out, check out The Happy Planner. You can still do simple bullet journaling it and you can be as creative as you like.)

You do have to spend a few dollars on journaling supplies, but there’s nothing wrong with putting yourself first, especially when your mental health is at stake. You could do it in a cheap notebook from Target but the sensory feeling of good paper does help.

Here’s how to make bullet journals work for you:

Just Get Started

You can spend a lot of time reading all about using bullet journal and watch a ton of YouTube videos to get ideas. But you aren’t going to get a feel for what will work for you until you start to give journaling a try for yourself. It’s okay to start with an inexpensive notebook and just try it out. Follow the basic bullet journal layout with an index, a key and a monthly spread. Track your daily tasks and see how it feels. Add in a few lists or collections and get a feel for what type of information is useful to you and what isn’t. Try trackers and various other hacks you come across and determine what works for you.

Keep It Simple

When you first start out bullet journaling, you may be tempted to write down and track every single thing. You may have lots of ideas for collections. It’s okay to start out with a bang but if you can’t sustain it, you may wind up feeling like a failure. Don’t over commit and track too much! The bullet journal will just become One More Thing To Do. Remember it’s a tool for wellness. Start small and figure out what works and what will be sustainable for you to write down and track.

Don’t Be Afraid To Rip Pages Out

You’re not in school any more! If you find that something isn’t working for you, don’t be afraid to rip it out. Maybe you thought that keeping a weekly reading collection was a good idea, but you couldn’t keep up with it? Go ahead and rip out that page. If your overall layout for your bullet journal isn’t working for you, don’t be afraid to toss it and start over. This is exactly it can be a great idea to just start out with a small and inexpensive notebook. Get another one and begin again. With a little practice you’ll find what works for you.

Make It Work For YOU!

Expect to do some testing and tweaking, and changing stuff around until you come up with something that works well for you. We all lead different lives and our brains work differently. Our bullet journals should reflect that. Keep working on it until you come up with a system that feels natural. You’ll know it when you get there. The end goal is to have a bullet journal setup that makes your live easier and helps you stay organized without feeling that writing in it is a chore.

For me, I ultimately went with a Happy Planner because I couldn’t keep up with the traditional bullet journal page layouts and I got stressed planning them out! My life is such that I need to know what’s going on in the coming weeks and months, track veterinary and self care, etc. At this busy season of my life, it’s easier to have the work done for me. I just use the grid format to bullet journal as before.

However you journal, when it comes to your mental health and self care, it pays to go the extra mile if you have to.

In 2009 I started to learn about blogging and got to spend some time learning the ropes from Kelly McCausey. That came to a crashing halt in 2010 when I began to experience catastrophic neurological symptoms which led to my diagnosis of cervical dystonia. It would be almost a year before I could sit in front of a computer again. Fast forward a few years to 2013. Beginning to feel better and become more productive, I read a few time management books and resolved that 2014 would be the year that I blogged intentionally and started a virtual assistant business. I planned to devote daily time to gentle exercise like yoga and walking. I started a Whole30. So many plans.

Then January began and I got sick with one of those nameless viral plagues that makes you feel like crap all over. I had it for a week. It went a way for a few days, came back and didn’t go away. Sore throat, extreme fatigue, muscle aches, GI woes. I told my allergist who is also an immunologist what was going on and he ordered a battery of tests.

A few days after my labs I learned that I had mononucleosis in addition to a sputtering thyroid. At 51, I was a late bloomer.

The familiar fog of depression began to envelope me. I spent a lot of time in bed worrying about a lot of things. I began to feel suffocated, overwhelmed and out of control.

In 2014 when I originally published this post I wrote the following…

I’m not feeling awful all the time. The nausea and brain fog seem to set in during the afternoon so I can still find moments to write and read the Bible and some learning materials. I just have to redeem the good moments to read constructively, find time for some movement (yoga is good for lymph glands) and cook so that I have what I need available during those times I don’t have the energy to cook.

I know this will (hopefully) pass. I’ve heard stories about mono taking as long as eight months to go away. That’s pretty depressing to think about. I’m doing every natural health protocol I can find and I’m thinking about visiting a twelve step meeting. But no matter what I can or can’t do, I can redeem the time with intentional living, even when I’m housebound and stuck in bed.

Later that year, the worst of it did pass and it didn’t take eight months. However, I do still struggle with fatigue and since then seem to be a little more prone to strep and occasional flaresIllness of any type makes my dystonia symptoms worse but I’m still pushing forward. I’ve started blogging regularly and have some clients.

I’ve learned that there are still lots of things that I can do, but I have to be careful about over doing it.

How to find balance while living with chronic illness

The hard lesson I’ve had to learn over the past few years is how to balance setting goals with my physical reality. Time continues to march on. For me, finding balance while living with chronic illness and the chronic pain that goes with it starts with making spiritual disciplines a priority. That means daily devotions, yoga, mindful living practices and continuous self examination.

First things first. For without Him, I can do nothing. Or as He said…”Seek first the kingdom and His righteousness, and ALL these things shall be added unto you.”

“I could only write worthwhile content when I walked with God, listened to God, and knew God intentionally. If anything I wrote was going to be of use to another person, it was because God spoke to me about it first.” — Tricia Goyer, Balanced, Finding Center as a Work-At-Home Mom.

Here are some things that help me as a mother living with chronic illness

*Technology – If my symptoms are flaring, there are lots of tasks that I can do from my laptop or tablet while resting in bed. It’s a great feeling to feel like I’m doing something productive instead of vegetating on Facebook or Netflix (nothing wrong with that once in awhile though!)

*Time management – At my stage in life, I should have figured this out by now but I’m still learning. I tend to bite off more than I can chew and get really disorganized which is stressful. Having a bullet journal helps me to see what my priorities are and what is realistic for my energy level on any given day.

*Keep expectations simple – I often feel like I’m on the sidelines watching other families do things that we can’t. But I am learning to find joy in the simplicity of my life and being home much of the time. I keep an eye out for serendipities – little things that bring me joy no matter how I’m feeling like being with my pets and finding quiet things to do with the kids that don’t tax me.

*Communication – Talk to your family and friends about the limitations that you’re living with and don’t be afraid to ask for help.

*Small daily steps – It might be 30 minutes a day, but it’s still something. I just have to be faithful to take whatever small steps I can and it will take me in the direction I want to go.

Finally, when I catch myself falling into self pity, it’s good to remember that God uses the fires and trials of my life to refine me according to His good purpose. And He promises that the end of the story is a good one.

“In fact, I’m quite certain that before God can ever bless a woman — and use her to impact many — He uses the hammer, the file, and the furnace to do a holy work.” — Tricia Goyer and Ocieanna Fleiss, Love Finds You in Glacier Bay, Alaska

When I first saw Thankful for Cervical Dystonia I took a deep breath but continued reading. I’ve had enough life lessons, thank you very much! Dystonia is a life changing, miserable condition that has impacted our entire family. How could anyone find gratitude in chronic illness?

But as I read on I saw that the author was grateful for the life lessons that cervical dystonia had taught her. Our worldviews are very different, but I as I read through the list I realized that I have been learning these same lessons myself since my own cervical dystonia diagnosis in 2010. Much like the 12 steps of recovery, some spiritual truths are universal and practical for anyone who seeks them.

No matter what chronic illness you’re living with, I know that you’ll find these life lessons to be encouraging as well as empowering.

And if you haven’t found gratitude in chronic illness, that’s okay too. We’re all on the journey. Keep seeking and reaching out to others and the way will become apparent to you. Read on.

Gratitude changes your perspective on the life that you’ve been given. When you have gratitude in your life you:

Feel less victimized by others or what’s happened in your life. Blaming no longer exists. Rather than look at what you may have lost or what you don’t have, you’re able to look at situations in a new light and move forward focusing on what you can do and what you have.

Have a more open heart. Gratitude helps you become more compassionate and empathetic. You’ll be able to connect with people even if you don’t think you have much in common with them. It’s a more rewarding way to live.

With gratitude you’ll be able to recognize and appreciate what you have rather than what you don’t. As you begin to become aware of what is good and positive in your life, what is good and positive will grow.

Attract more gratitude and happiness. It’s often found that people attract experiences and people based on what they expect. If you focus on and expect good things to happen, more good may show up.

Here’s 15 areas of your life to seek gratitude..try keeping a simple journal and writing down one thing that you’re grateful for every day.

Music

Your pets

Nature

Your body – no matter what it’s capable of

The gift of story in books, movies and social media

Your faith

Meditation

Art

People

Food

Your Home

Modern conveniences

Your work

Experiences

Hobbies that bring you joy.

Finally, here’s some Christian scriptures to meditate on:

Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:16-18

Give thanks to the Lord, for he is good. His love endures forever. Psalm 136:1

Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way. James 1:2-8

Imagine you were in this kind of pain every day while trying to function as a spouse and special needs parent.

That’s my reality. Although it’s the third most common movement disorder after Parkinson’s and Essential Tremor, most people haven’t heard of it. It’s incredibly frustrating and while my family and friends are supportive, I do get my share of stares and insensitive comments when I’m out in public.

Dystonia treatment options are limited to Botox in the muscles and oral meds of varying effectiveness and potentially dangerous side effects or DBS neurosurgery. (At this point I have not pursued DBS surgery because it’s not a cure, I don’t have anyone on my plan locally to see and I do not wish to put my family through any more stress than they already experience. But I’m not ruling it out if the opportunity became available in the future.)

This is what smiling through pain looks like. That head tilt…that’s the position it was in all the time. The pain was indescribable. I was incapacitated and mostly in bed and on my couch for nearly a year.

I’ve tried quite a few oral meds but never stayed with the majority of them for long because I was leery of potential addiction or mind altering side effects(for instance, some Parkinson’s meds can cause compulsive behavior issues like shopping or gambling.) I’ve tried holistic measures of every kind. Limited relief is the best I can get. Most evenings, the spasms begin and I really have no choice other than to lay down to get the muscles to relax.

I’m a person with 30 years of sobriety and I support Yes On 2 for the legalization of medical marijuana in Florida. This has been hard for me to talk about. It isn’t about a high. Medical marijuana is a safe and effective form of pain relief that is less toxic than benzos (like klonopin) which do work for me but I have to take them sparingly because of addiction potential.

A few months ago I learned that the first medical marijuana patient in Florida shared my diagnosis and that I would probably qualify for it. After spending some time speaking with other people in recovery and the inevitable Google research on “sobriety and medical marijuana” I’ve come to the following conclusions:

*Twelve Step fellowship state that it does not have an opinion on outside issues, and that they are not doctors.
*The only form of legal medical marijuana I can get in Florida will be the low THC variety but that being said many patients need access to the whole plant. The law needs to be expanded to include everyone who needs it.
*I’ve read a number of accounts of twelve step fellowship members with MS and Parkinson’s who got a medical marijuana card and it has not impacted their sobriety. That being said, every person in recovery must evaluate their own motives for seeking a prescription.
*I’ll continue to do my yoga, pool work and other holistic modalities that have been proven to help. I’ll also continue to practice my daily spiritual disciplines and recovery program as well as daily self examination.

I didn’t get sober to sentence myself to a lifetime of pain and suffering. Untreated, relentless chronic pain can lead to other health issues, not to mention depression and anxiety which is risky for me. If medical marijuana can help me better function as a person, a wife and mom as other dystonia patients are telling me, why would I choose ongoing chronic pain?

In the dystonia community, there are occasional suicides that I’ve become aware of. It’s not hard to understand why this happens. The ongoing pain is vicious. Dystonia patients usually become disabled but struggle with getting diagnosis, treatment, support and disability. With my own history of depression and anxiety, I’ve made it a priority to let other people know what’s going and to practice spiritual disciplines that are helpful to me such as prayer, devotions, yoga and mindful living.

This is my story and my journey. To be true to my recovery program, I’ve decided to be honest about my decision for the benefit of other chronic pain patients in recovery. If you are a chronic pain patient, please talk your feelings and options over with your doctor and trusted friends in your fellowship or spiritual community.

Postscript: Amendment 2 passed in Florida in 2016 allowing medical marijuana to be used for certain conditions. My condition (cervical dystonia) had already been approved so I was able to obtain my first order shortly thereafter. I’m presently using CBD oil in capsule form with very minimal THC and am experiencing noticeable relief from my daily muscle spasms and head shaking.

It’s that time of year when the reality of the new school year starts to sinks in, followed closely by Mommy Guilt. For me, that means continuing to homeschool my 17 year old with learning disabilities and getting my 15 year old son with Down Syndrome to his new charter school that’s about 22 miles away because the local high school is not the best environment for his growth and maturity. And then there’s the never ending doctor appointments and wondering if we should attempt any extracurricular activities. And when do I fit in time for the gym and yoga?

Then the mommy guilt starts to settle in. It’s hard for me to watch the families around me who are able to participate or at least just get their kids to the plethora of supplemental activities in our area.

It’s harder still to watch the happy pictures on my social media feed of happy families who simply get to do life without lots of forethought. Just like I used do to before cervical dystonia entered my life as a very unwanted houseguest in 2010.

In our family we have been blessed that as a retiree with a pension, my husband has been able to take over much of the care for our son and get him where he needs to be. My cervical dystonia diagnosis has also meant getting off the long wait for social services in Florida to gett much needed assistance, and I’m profoundly grateful for that. God has shown his provision for our family, without a doubt.

The anxiety begins as I consider the school year calendar. I really need to get in the pool 2 or 3 times a week. How do I manage that at the end of the day when I’m typically exhausted and out of spoons? And what about church and small group activities…you have to show up to feel part of but how does that work when you’re constantly leveled with fatigue? How about a recovery meeting once in awhile? Many of my friends live in my computer now. I know that’s not the best thing but am not sure what the alternative is in this season of my life.

Right now I don’t know how it’s all going to come together. It is labor intensive for the rest of my family. I’m working on better time management practices and organization. I have to plan around the reality that some days my muscles are going to be spasming so much I don’t want to get out of bed, much less leave the house. I can drive locally but get really nervous on the interstate at rush hour.

Some Tips for Coping with Mommy Guilt and Chronic Pain

Spiritual Disciplines – My journey with chronic pain has really developed my interest in prayer, meditation and the spiritual disciplines. Years ago in recovery rooms I learned that we only have a daily reprieve from our disease based on our spiritual condition. Taking that daily time with God helps the day to flow better, and I’m learning to continuously work on practicing the presence of God and developing a habit of unceasing prayer.

Self care – As moms, we tend to put ourselves last. I did it for years. But when chronic pain or illness is a part of our lives, we have to make that time for our own wellness a priority. It isn’t selfish. Simplify your life as much as you can to minimize stress. Use your crockpot to save spoons at the end of the day. Have your kids help clean the house. If you need a pajama day, it’s perfectly okay. Take full advantage of the convenience of online shopping.

Find what you love and just do it – I blog because I like it. Writing is a great release for me and I’ve loved learning all the technical ins and outs of blogging. It’s empowering to know that my brain still works. I also love yoga. When I could do little else besides lay on the couch and read, yoga gave me my physical life back and something to strive for. For you it might be quilting, crocheting or gentle gardening. Whatever it is for you, it’s a great mental distraction from the dailiness of chronic pain.

Communication – Talk with your family about your condition and how it impacts you without making them feel guilty or overwhelming them. You’ll have children who are more sensitive and patient. That being said, it is hard to watch them sacrifice over and over again.

Let go of Mommy Guilt – You’re a good mom (preaching to myself here.) You are enough. Do the best you can. Embrace life’s little moments as they come to you no matter where you are. Whether you’re on the couch or out and about, your children love you no matter what and appreciate what you do for them.

Hooray for National Dog Day! I don’t know where I’d be without my dogs’ unconditional love and constant companionship.

As a person with the neurological condition dystonia, I suffer from occasional balance issues as well as ongoing anxiety when I have to go out when my symptoms are flaring. At times I’ve wondered if I could train my own service dog but I already have four dogs, none of whom are really suited for that type of work. and as a mom of three kids still at home, I don’t realistically have the time to train a service dog. Still, I reap all the positive benefits of dog ownership and that in itself is really therapeutic for me.

Service and therapy dogs are a big topic of interest in the disability and special needs community. The wait for a service dog can be long and expensive, leading many people to ask if they can train their own service dog. Others are interested in taking their dogs to visit children with special needs or seniors in nursing homes. There are a number of things you should consider before undertaking such a serious commitment.

Obedience

Your dog might be relatively well behaved at home, but what happens when you go out? Does your dog bark or snarl at other animals? If behavior is a problem, you’ll want to consider an obedience course. Make sure that the training methods comply with the AKC/Canine Good Citizen test. A good training program can take from six to twelve weeks to complete. Your dog should be able to follow your commands at all times and in every situation.

Temperament

How does your pet react around other people? A service dog must have a calm and neutral temperament. For therapy dogs, there may be lots of petting involved. Kids are often loud and rough until they are taught to handle pets. Is your dog able to deal with seniors and special needs children? A good service dog or therapy pet is one that stays calm and gentle in a variety of circumstances.

Socialization

Dogs and other animals that are used to being around people are more likely to be friendly and outgoing in a crowd of new faces at a nursing home, a hospital or disability event. They also need to be comfortable and not spooked when around other animals.

Clean bill of health

Therapy dogs should be free of disease and properly vaccinated so as not to pose a health threat to vulnerable populations. The center or the organization you will be working with may require proof of their health. For therapy pets, non-shedding breeds might be preferable though dogs of all types can do therapy work. Remember, some patients may have allergies to animal dander.

In Conclusion

Whether you’re looking at the possibility of service or therapy work for your dog, it’s critical that you go through the proper channels and be sure your dog is properly trained. Nothing is worse than people who get fake service IDs for their dogs. It makes it harder for the people who genuinely need a service dog to take their dogs out safely.

For further information on Service Dog and Pet Therapy Training, check out the following links.

The first time I heard about Bill Irwin was during a church service sometime in 1990. The pastor announced that there was a blind man hiking the Appalachian Trail all the way from Georgia to Maine and he asked the congregation to pray for him. I couldn’t foresee that we would actually get to meet him, become friends with him in the not-too-distant future or know the deep impact that he would have on my life as disability came sooner than I could ever imagine.

In 1991, my husband decided to start a Came to Believe retreat in Queens, New York. These retreats freely spoke of the influence that the Bible, Oxford group and devotional ideas that helped early AAs to get and stay sober. We thought Bill would be a wonderful speaker for our event and were very excited when he accepted our invitation.

One of the wonderful gifts of The Fellowship is that in spite of the heartache of our drinking and drugging histories, and the price we paid to get to AA, we can find laughter and camaraderie with other alcoholics and addicts. Bill had us hysterically laughing as he shared some of his adventures with us. But most importantly, he showed us the transforming power of Jesus Christ that turned his life around and became a powerful witness to the many who have heard him speak or read his book Blind Courage.

When we met Bill, I was 30 years old and untouched by disability or limitations. I went on a few long walks (would they be anything else but long?) with Bill around Queens and Brooklyn. My husband has never been fond of long walks. One time Bill had him walk from Brooklyn to Manhattan in the snow and then wanted to walk back. He responded, “I don’t know about you, but I’m taking the train!”

We hit it off very well with Bill and he invited us to visit him in North Carolina. He lost his grandson tragically just before our visit but he insisted that we come anyway. My daughter was just five months old at the time and took her first crawl toward Orient. We had a lot of fun and ate fabulous barbecue just about every night. (This was before the Hallelujah Diet!)

We moved to the Tampa Bay area of Florida in 1994 and I had three more kids. Motherhood has not been an easy journey for me. Among four kids we have diagnoses of scoliosis, NF-1, Down Syndrome, a congenital heart defect and learning disabilities. I was overwhelmed just about all of the time.

I was at a Down Syndrome conference around 2009 and remember very clearly the speaker saying that disability would happen to all of us eventually if we lived long enough. Like anybody else, I figured that was way off in the future.

It wasn’t. In the summer of 2010 I began to experience distressing neurological symptoms causing my neck and shoulders to twist involuntarily, as well as a head tremor. I was quickly diagnosed with cervical dystonia, a neurological movement disorder. It is a devastating diagnosis, and doubly so as I was already a special needs mom. I couldn’t drive and could barely get off the couch to take care of my family. Six months after my symptoms started, my son had a cardiac emergency and had to get a pacemaker.

Although I’ve been sober since 1986, depression and anxiety are still a real problem for me. They got worse with the intensity of my symptoms. I researched cervical dystonia online and was distressed to learn of some suicide attempts and drinking. I knew I was in a dangerous place but I could not get myself to a meeting.

I made a decision I was going to hang in there for my family and chased recovery as hard as I had chased drinking, drugs and sobriety. I found people online who were living with dystonia positively. The one thing I found they all had in common was exercise was a big priority for them. Initially I couldn’t walk more than a couple of hundred yards on my street. But with physical therapy stretches and yoga, I slowly started to improve.

And then I remembered Bill and his walk. I started to think that God had sent Bill into our lives as His advance man to show me how to live with disability and recovery. It was hard for me to stay in touch with Bill as our lives had become so hectic, but I often thought about the walk. The part I remember most clearly was when he was crossing the treacherous river. How often I’ve felt like that in my own life.

I was saddened to learn that Bill went Home last week. Saturday I went to bed teary eyed thinking about Bill. Sunday morning I woke up to find out that my son Nicolas had made the cover of the local section of two area newspapers. This is Bill’s legacy in our family. Overcoming and perseverance. I will surely share Bill’s story with Nicolas as he has the ability to understand that nothing has to stop him from living a purposeful life.

Unless God chooses to heal me, dystonia will be a thorn in my flesh the rest of my life. Despite my exercise and shots, some days are miserable. I can get depressed and feel sorry for myself about not being the same mom to my younger kids that I was to the oldest. But God did not leave me comfortless. He sent friends such as Bill Irwin into my path to show me how to live with disability and limitations.

I was hoping to be able to see Bill again and sadly I won’t this side of heaven. But I know that he’s with God now and he can truly see. I was blessed to meet his wife Debra and I just know that God has great things in store for her to continue the ministry that she and Bill had and their message will continue to go forth.

Friday was Shot Day. I have cervical dystonia, and to help relieve the muscle spasms I get 400 units of Xeomin injected into various sites around my neck and shoulders, as shown in this graphic. I have to do this every three months. The doctor uses an EMG machine to help guide the needle into the areas that are spasming the most. The machine squawks like a police radio while he’s doing this.

I’ve learned to breathe my way through the injections. I typically need a few days of downtime after the shots as I usually experience some post injection pain. This is my third time with this doctor and he’s still trying to fine tune dosages. It’s an art and a science to figure out how much and where to place this injection. This time I got 100 units alone into my right trapezius, the muscle I refer to as “the bad boy.”

This time was the first time in three years I’ve been able to drive myself on Shot Day. I mention this to the doctor and told him it was a good thing because my son needed to have his pacemaker checked. At this point I’m used to people being a little stunned and not knowing what to say to me, so I’ve kind of learned to just smile at the shocked silence.

I was even able to stop at Target on the way back and pick up a few groceries. I love to shop at Target but one thing I hate about is they do not automatically put your bags in the cart and I find myself having to wait a few minutes with all the grocery bags piled up, customers waiting to pay behind me and wondering to myself if people think I’m a prima donna for asking for help. Nobody has said anything yet. I’m not sure how obvious I look. I have some dystonia awareness cards to carry around with me but I keep forgetting to take them.

I planned on a quiet Saturday resting but our usual respite provider was not able to come and I had Nicolas in my room every 10 minutes asking if he could play outside in the 90 plus heat. By noon I was snarling at everybody. Things settle down after lunch and I sit in bed with my iPad. I track what is going on with #JusticeForEthan on Twitter, play some Candy Crush, join a few blog networks and discover 10 new posts written about Mrs. Hall. I mentally resolved to run a drama free blog and almost immediately begun wondering how long that would last. Finally settled in with the Kindle app and finished a book.

We were asked to speak for a few minutes at church on Sunday. I never liked public speaking before and now with my neck I have one more thing to be self conscious about. It went okay and I think I was probably pretty straight. I’m sure nobody listening noticed but this is the social anxiety I’ve developed since the diagnosis. You’d think being around the disability community as much as I am that I would have let some of my vanity go by now but that hasn’t happened yet.

I am still waking up at night thinking I am back at the beach. Come Monday I am vaguely considering returning to aqua zumba then the stiffness reminds me to give it a little more time….